Fill in the Gaps > Too many older people who are deafblind miss out on the support they need A toolkit for professionals working with older deafblind people This booklet offers information and advice for those working with older deafblind people. It explains what deafblindness is and how it affects people. It sets out how Health and Social Care Trusts can provide appropriate services and explains how deafblind people can be supported and helped. Increasing numbers of older people are developing hearing and vision problems. Some older people have substantial hearing and vision difficulties – known as deafblindness. Often this hearing and vision loss comes on very gradually. Older people themselves, and others around them, may not recognise or understand what is happening. Because of this combined hearing and vision loss, they may have problems with communicating, getting around and accessing information. This can cause difficulties with many everyday activities and can make them feel excluded from society. But it doesn’t have to be like this. If the right services and opportunities are available, older deafblind people can live independently and make choices about how they wish to live. If appropriate services are provided at the right time, the need for greater health and social care provision at a later stage can be reduced. Health and Social Care Trusts have responsibilities to support older people, meet social care needs and promote inclusion. To provide support for a deafblind older person requires specialist assessments and provision of appropriate information and services designed to meet the needs of deafblind people. In many cases, older deafblind people are seen by a social work team for older people – rather than a team which specialises in sensory impairment. This booklet explains how you can help to make sure that older deafblind people get the support they are entitled to. 1. Deafblindness and older people ? What is deafblindness? ? How it affects older people ? Talking about sensory loss ? How many older people are affected? 2. Service provision ? Services for deafblind people ? The Single Assessment Tool ? Care planning ? Recognising deafblindness 3. Working with older deafblind people ? How can your team work effectively with older deafblind people? ? Indicators of hearing and vision loss ? Communicating effectively – face to face ? Communicating effectively – at a distance ? What to do next 4. Resources Useful organisations References Web-based resources 1 > Deafblindness and older people The term ‘deafblind’ describes people of all ages who have a combined hearing and vision impairment. These individuals may be deaf or hard of hearing as well as blind or partially sighted. They do not have to be completely deaf and blind. In fact, most deafblind people have some useful hearing or vision. What is deafblindness? Definitions of deafblindness tend not to focus on the degree of deafness or blindness a person has, but rather on the effect of the combined loss on everyday life – how it affects their ability to communicate, to get around and to access all kinds of information. Deafblindness is not just a deaf person who cannot see or a blind person who cannot hear. The two impairments impact on each other and multiply the total effect. One deafblind person describes it like this: “If you think of deafness as the colour yellow and blindness as the colour blue, when you mix the two together you don’t get yellow-blue but a completely different colour – green.” How it affects older people Deafblindness affects different people in different ways. When communication is limited, people become socially and emotionally isolated. When people can’t get around by themselves it affects their confidence, independence and daily living skills. Without access to information, people can’t make informed decisions and this leads to further loss of independence. These are common experiences for older deafblind people. Older People’s social work teams can do a great deal to help older deafblind people. See section 3 for information on how to make this happen. A combination of visual and hearing impairment will multiply the difficulties an individual faces. For example… ? If you are deaf or hard of hearing and can’t hear what someone is saying, you watch their lips and facial expressions for extra clues. But if you also become blind or partially sighted, how will you understand what is being said? ? If you are a blind or partially sighted person who is used to travelling independently, you depend on your hearing. But if you become deaf or hard of hearing and can’t hear or see the traffic, how will you know when it’s safe to cross the road? ? If you can no longer easily see or hear the television, listen to the radio, read your letters, use the phone or engage in conversation you become isolated from people, events and society. This sensory deprivation can lead to extreme levels of boredom, stress, depression and withdrawal. Don’t miss an opportunity If we take the view that loss of sight and hearing are a normal, acceptable part of ageing, we miss the opportunity to help people make best use of their remaining vision and hearing. Talking about sensory loss Many older people with a hearing and vision loss don’t think of themselves as deafblind. They may think that sensory loss is just one more effect of old age along with mobility problems, memory loss, illness or depression – and it often is. But that doesn’t mean we can’t do anything about it. Their hearing and vision loss may have crept up on them slowly so they only gradually realise that something is wrong. They may see some things, but not others. They may hear in some situations, but not others. They may use phrases such as: “I don’t hear too well” or “I’m having problems with my eyes”. And yet the everyday difficulties they describe are not just to do with ageing but are the typical effects of deafblindness. Professionals are likely to use terms such as deafblind or dual sensory loss. These terms are often used interchangeably to acknowledge that the combined loss of hearing and vision is significant for anyone, even if he or she still has some useful hearing and vision. Even if a person doesn’t use the term deafblind about themselves, we need to recognise the effects of deafblindness and offer support and services to meet those needs. Be aware of the language a person uses about themselves and adapt your own to reflect what they are comfortable with. How many older people are affected? It’s not known exactly how many older people have a dual sensory loss. Deafblindness is often a hidden disability and problems of definition and assessment make collecting statistics difficult. What is clear is that among people over 75 the incidence is much higher than in the rest of the population. Sense estimates that about 4.6% of people aged over 75 have enough hearing and sight loss to be considered deafblind. This means that there are about 4,600 deafblind people over the age of 75 in Northern Ireland. Without support it is extremely difficult for deafblind older people to lead an active healthy life. Mobility, shopping and cooking healthy food and keeping mentally active are all a challenge. It is not surprising that deafblind older people have higher rates of common conditions of older age. (Crewes and Campbell, 2004) Stroke (3.6 times higher) Arthritis (2.2 times higher) Heart disease (2.5 times higher) Hypertension (1.5 times higher) Falls (3.0 times higher) Depression (2.7 times higher) You are probably already in contact with some older people with dual sensory loss. Read on to find out how you can make your services accessible to them and promote independence, choice and good health. 2 > Service provision All social services teams need to understand how to respond to the needs of deafblind people. This chapter sets out issues you need to be aware of to provide a good service for deafblind people, and how this relates to single assessment and care planning. Services for deafblind people Deafblind people have very specific needs and face particular challenges. Many services for people with a single sensory loss are not well equipped to support those with dual sensory loss. Identifying deafblind people The first step in providing a service is to identify people who may be deafblind. Amongst older people this can be harder than you might think. Deafblind older people, and those around them, often accept loss of hearing and sight as a natural part of ageing, and assume that nothing can be done. There is plenty of support that can help people in this situation so it is important that you look out for the signs of deafblindness when talking to older people and their carers. Assessment It is important that when a deafblind older person is assessed the person carrying out the assessment has the knowledge and skills needed to identify the challenges the person faces and the support that might help. Otherwise signs of deafblindness can be missed, risks can be underestimated, and specialist support may not be provided. Specialist services Deafblind people may not necessarily be able to benefit from mainstream services or those services aimed primarily at blind people or deaf people who are able to rely on their other senses. They may need specialist equipment, adapted services, or specialist one-to-one human support. See page 20 for more information about what types of support can help. Information Deafblind people may need information in a range of different formats. See Section 3 for more information. Deafblind older people and: A. Single Assessment Tool It is important that everyone using the Single Assessment Tool (SAT) keeps deafblindness in mind. Contact screening When considering if there are communication difficulties, think about the impact of sensory loss. Even someone who still uses speech may struggle to understand unless the person uses clear speech. Make sure this information is recorded clearly. Interpreter requirements will include those who need a sign language or deafblind manual interpreter. Core assessment Think about the impact of sensory loss on the person’s life as a whole, not just when completing sections on sensory functioning and communication. Deafblindness will increase the risk of falls and makes taking exercise difficult. Being unable to see and hear makes it hard to shop and prepare meals, which affects the ability to eat and drink. Awareness and decision making may be affected by dual sensory loss. Be careful not to confuse disorientation and confusion because of lack of accessible information due to deafblindness with dementia. Deafblind older people make take a long time to understand information and make decisions because taking in the information is so difficult rather than because they have any difficulty making a decision. Complex assessment Those with a high level of hearing and sight loss are likely to need a complex assessment carried out by someone with a good knowledge of deafblindness, its impact and the services that can help. How to use SAT with older deafblind people Think dual sensory! • Every time you are assessing an older person, ask yourself whether their needs could be related to deafblindness. • Make sure you are trained to recognise deafblindness and its effects. At a minimum, everyone carrying out a contact screening or core assessment should have the Fill in the Gaps checklist for identifying deafblind people. • Make sure you use good communication tactics which are useful with all older people. (For information on communication tactics, see section 3). Make the link • As soon as an assessment identifies that there may be a dual sensory loss, arrange a specialist assessment via the Sensory Team or other specialist agency such as Sense. Assessment and skills training by a specialist worker can lead to increased independence and enhanced quality of life. • Develop effective links with the sensory specialists in your Health and Social Care Trust and other specialist agencies. • Take training to develop your own skills in identifying the potential independent living skills of an older deafblind person. Information • Make sure you have good information about both regional and local services. • Make sure information, letters and care plans are in accessible formats (e.g. large print, Braille, tape or disk). For information about transcription services, see the Resources section. Communication needs • Be aware that some people may need a human aid with them during assessment – an interpreter, communicator-guide or advocate. • Managers need to be aware of the cost and time implications. Extra time may be required to arrange interpreters. With or without interpreters, the assessment itself is likely to take extra time because of the specific communication needs of a deafblind individual. The effort of concentrating on communicating for a prolonged period can be exhausting and may require more than one visit. For older deafblind people to be at the heart of assessment, managers must ensure there is some flexibility in meeting targets. Case Study: George,73 George is 73 and visually impaired with little useful central vision. He is also severely deaf, relying on two hearing aids to amplify speech and other environmental sounds. But he struggles to follow speech even in a quiet environment. George and his wife had a supportive relationship and managed life well without support. However he appears to have become depressed since his wife’s death. His GP requests an assessment because she is concerned about his ability to cope on his own. The contact screening is carried out and the assessor notes George’s difficulty understanding speech. She notes down that someone with clear speech and an understanding of sensory loss should carry out the core assessment. During the core assessment, the assessor is able to focus some questions specifically on these issues. She realises that a complex assessment is necessary and makes the appropriate referral to someone with experience and knowledge of deafblindness. The complex assessment identifies key areas of provision which promote independence and choice for George. These include: • a vibrating pager system to alert George to callers at the door • a loop system to provide some access to the TV • skills training around safety in the kitchen and home environment • mobility training which gives him the confidence to go out alone in the local area, and • weekly attendance at a group for visually impaired people where his communication needs are catered for. B) Care planning When a decision is being made about social care services, it’s important to recognise the effect of dual sensory loss on a range of areas of a person’s life and not just focus on personal care. Support should be put in place to maintain independence. Services may need to be put in place to address any of the following: • Physical health – to enable a healthy lifestyle including healthy eating and moderate exercise • Mental health – to prevent isolation and depression • Awareness and decision making – people may struggle to access the information required to make decisions • Maintaining independence – most older deafblind people have the skills needed to live independently but they may need some support to enable them to use these skills such as communication and guiding support • Improving independence – older people may need to learn new skills, such as mobility, new methods of communication or new ways to undertake daily living tasks • Carer support – carers may need some advice about areas such as new communication and guiding skills to enable them to continue supporting the person. Case Study: Jim, 82 A woman reports that her 82 year old father who is deaf seems to have become depressed. Jim doesn’t seem to want to communicate with his family and isn’t eating the meals provided by social services. He has also lost interest in his jigsaw puzzles, favourite films and regular pints at the pub nearby. He seems to be withdrawing into his own world. What will the assessment uncover? Contact screening records Jim’s sensory loss. But Jim is still managing to carry out his own personal care and is supported with daily living tasks by his daughter who visits twice a week. The conclusion is that he is therefore not eligible for a service. If a deafblind person is screened out at this initial stage, without an assessment by a specialist, the risks to independence are high and physical and mental health are likely to deteriorate. There is then a high likelihood that more intensive services will be required at a later date. More about Jim, 82 An assessment carried out by someone with knowledge of dual sensory loss discovers that Jim’s sight is deteriorating and is affecting his ability to lip-read people, access leisure activities in the home, and get out in the local area. Without services the risk to his ability to live independently is high. Simple services will make a difference: communication tips for both him and his family can improve his involvement in conversation; task lighting can help him see his meal and feel more like eating it; simple mobility training means he can get back out to the local pub. An assessor with specialist understanding of the needs of older deafblind people will emphasise the effects of hearing and vision difficulties as well as assessing the effects of ageing, vulnerability or other disabling conditions. Specific support to promote independence in relation to deafblindness can include: • simple communication strategies • equipment • help to find new ways of carrying out daily tasks • mobility training, or • one-to-one support. Recognising deafblindness As the team most likely to come into contact with older people with dual sensory loss, it’s important to make sure that all staff are trained to recognise deafblindness and its effect on independence (see Resources section for information about training). Learn to recognise the disability and how people can be supported - rather than accepting it as simply part of the ageing process which can’t be helped. Why not develop a ‘champion’ for sensory issues within your team? Case Study: Hyacinth, 79 A 79 year old blind woman who uses a hearing aid to support her deteriorating hearing lives independently and copes well at home in a familiar environment. However outside the home she is experiencing increasing difficulty. She can no longer get the bus to the shops as she can’t see the bus numbers and relies on other people to tell her which bus has arrived. Because of the background noise of traffic, she can’t hear what people are saying and has felt confused and unable to travel. As well as shopping for food, her weekly trip is a vital link to the ethnic community where she is known. Because of this she is reluctant to use a shopping service. If a one-to-one communicator-guide is provided at this stage it will ensure her continued involvement, enable her to make independent choices and prevent further deterioration. Without this, Hyacinth is at risk of losing skills and requiring higher levels of care, including the possibility of needing residential care. 3 > Working with older deafblind people In this section we will look at some of the simple, practical steps you can take to help you identify older deafblind people, communicate effectively and provide information in accessible formats. How can your team work effectively with older deafblind people? As we have seen, older people who can’t see or hear fully what is going on around them may find the physical and social environment confusing or even hostile. The effort and skills required to go out or engage in social activity can be very tiring and may lead to increasing withdrawal and isolation. There is also an emotional reaction to dual sensory loss. People are cut off from the world around them as they used to experience it and this can lead to feelings of loss, frustration, anger and grief. In this section we will look at some of the simple, practical adjustments that will help you to identify older deafblind people, communicate effectively and provide information in accessible formats. An older deafblind person is likely to need help in the following areas: • Communication • Information – including public information • Mobility and transport • Stimulation and relief from isolation • Emotional support and counselling • Equipment • Housing The following checklists will help you Indicators of hearing and vision loss A person with hearing difficulties may: • Complain that others mumble or speak too quickly • Ask others to repeat what they’ve said • Ask others to speak louder • Repeat words to verify what’s been said • Find it difficult to keep up conversations in noisy environments or in a group • Have difficulty understanding unfamiliar people or accents • Get tired in conversations because of the need to concentrate • Withdraw from situations where conversation is expected • Need TV or radio volume louder than is comfortable for others • Find it hard to hear on the telephone • Use a hearing aid or loop system. A person with visual difficulties may: • Find it hard to identify objects or familiar faces • Need more light for reading and other activities • Find it hard to cope with glare, e.g. bright sunlight • Sit unusually close to the TV • Have unusual reading habits, e.g. holding a book close to the face • Give up reading, watching television or other activities • Be unable to locate small objects • Spill food or knock over cups • Wear mismatched colours or have stained clothing • Have difficulty moving around – walking slowly or with less confidence • Bump into things • Have difficulties caused by changes in light levels • Have difficulties with unfamiliar routes or places. Older people with dual sensory loss often have problems with communication. If we use common sense, clear speech and courtesy we can help an older person to understand what is being said. Simple solutions can improve the environment dramatically for deafblind people. Communicating effectively – face to face Before you start: • Make sure you have the person’s attention • Always tell a visually impaired person that you are there • Ask the person what will make communication effective and do that. Where to talk: • Between 3 – 6 feet apart at the same level • Good light is important. Face the light so that your full face can be seen • Avoid background noise. Turn it off or move somewhere quieter. Clear speech: • Speak clearly • Speak a little more slowly than usual, but keep the natural rhythm of speech • Speak a little louder, but don’t shout as this will distort your voice and lip patterns • Try to make your lip patterns clear, but don’t over-exaggerate • Keep your face visible and your head still. Don’t smoke, eat, chew gum or cover your mouth with your hand • Focus on the person you are talking to. If you are using an interpreter, always talk directly to the deaf person, not the interpreter. Help the other person to understand: • Don’t hurry, take your time • If necessary, repeat phrases. If this doesn’t work, try re-phrasing the whole sentence. Some words are easier to lip-read than others • Make the subject clear from the start and if you change the subject, make sure the person knows • Use gestures and facial expression to support what you are saying • Be aware that if a person is smiling and nodding it doesn’t necessarily mean they have understood you • Be aware that the effort of concentration on communicating can be hard work for an older deafblind person and cannot be maintained for long periods of time • Assessments are likely to take more than one visit and extra time will need to be allocated • Be ready to write things down, using an A4 note pad with a black marker pen. Interpreters Some older deafblind people use specialist forms of communication and will require communication support during the assessment process. You will need to know what form of communication the deafblind person uses and book appropriate interpreters well in advance. Communication methods may include: • British/Irish Sign Language • Deafblind manual alphabet • Block • Lip-speaking • Speech to text • Spoken languages other than English. Your local sensory team can provide information about booking interpreters and there is information in the Resources section at the back of this booklet. Communicating effectively – at a distance Telephone Many older deafblind people have difficulty using the telephone but continue to depend on it. Here are some simple tips to help you communicate effectively on the telephone. • Use the clear speech skills described earlier • Don’t shout or hold the phone too close to your mouth, as this causes distortion • Don’t speak too quietly • When phoning a person with dual sensory loss, give them time to adjust their hearing aid before starting the conversation • Keep answer phone messages short and simple. Textphones Textphones allow deaf and hard of hearing people to communicate through the standard telephone network. Textphones have a display screen and keyboard so that the user can type what they want to say and read the typed reply. Some deafblind people use textphones with a large display screen. Information about different types of telephones and textphones can be found on the RNID website: www.rnid.org.uk BT provides services for people with sensory impairments, including free directory enquiries for visually impaired people (call 195) and text-based phone services for deaf or hard of hearing people. RNID Typetalk is a national telephone relay service. Deafblind textphone users can type messages to the Typetalk operator who then relays the message in speech to a hearing person on a standard phone. The spoken reply is then relayed by the operator by typing it as text. BT TextDirect links textphone users with other text and voice phone users (via the RNID Typetalk service) and it’s accessible to all land lines whether supplied by BT or not. Textphone users dial the prefix 18001 and then the phone number they want. Voice phone users dial the prefix 18002 then the textphone number they want. Written information All information and correspondence that your team provides should be available in accessible formats. For example, appointment letters, assessments, care plans, information about services, etc. should be available in large print, Braille, tape or disk. Many visually impaired people have enough vision to read printed information if it is large and bold. No single size is suitable for everyone, but most people prefer their large print in the range of 16 to 22 point. Arial is an example of a clear font. You can word process simple large print documents yourself. If a person requires information in Braille, audio tape or disk formats, you can use the RNIB transcription service – details in the Resources section. If in doubt, contact your local Sensory Team or other specialist sensory agencies such as RNIB. Specialist services This is a brief overview of the services that may be available for older deafblind people via your sensory impairment team (or similar): • Specialist assessment and care planning – assessing the effects of hearing and vision difficulties and their impact on maintaining independence. • Advice, information and advocacy – accessing health and social services, welfare rights, national deafblind organisations, local agencies. • Equipment – assessment and provision of equipment to assist with everyday activities: e.g., easy-to-see amplified phones; large screen textphones; personal TV listeners; loop systems; tactile markers; vibrating pager systems for doorbell, telephone or smoke alarm alerting. • Mobility training – including advice on making the home safer to move around in or training in travelling outdoors independently and safely. • Communication – including support to develop appropriate communication skills for both the deafblind person themselves and family members or carers and information about using interpreters. • Other skills training – including safety in the kitchen and home environment. • One-to-one support – e.g. communicator-guide services. Communicator-guides are trained to help deafblind people with communication and mobility to enable their involvement in every day activities and relieve isolation. The tasks carried out will vary depending on the individual deafblind person and their needs, but may include: attending appointments; escorting to the shops; reading correspondence; taking exercise; leisure activities. This service is designed to complement other services (e.g. Home Care) and should not be used to replace it. What to do when you’ve read this… 1. Discuss the needs of older deafblind people at one of your team meetings. Think about some of these questions : • Do we recognise that combined hearing and vision loss interact to create a separate and unique disability? • Do we know of local older deafblind people? How many are we aware of? • How can we develop our skills in identifying deafblind people? What training is available? Who should be trained? Could one team member be appointed as a ‘sensory champion’? • When assessing older people, do we think about the possibility of dual sensory loss and its effects? • When assessing older people, do we adapt sufficiently to their communication needs? Do we know how to access interpreters or other communication support if necessary? • Is our assessment information accessible to users and carers who have dual sensory loss? • How can we use the Disability Discrimination Act 1995 to promote the interests of older deafblind people? • What services are provided locally for older deafblind people via statutory or voluntary agencies? • Do we know when and where to refer on for specialist assessment? 2. Find out how to contact your local Sensory team and write their phone number here: 3. Consider inviting a specialist from the Sensory team to your team meeting to discuss how you can work together effectively with older deafblind people. 4. Consider organising an event during Deafblind Awareness Week. 4 > Resources There are a range of organisations, publications and resources which can help you improve services to deafblind older people. Useful organisations Sense 51 Mallusk Road Mallusk BT36 4RU Tel/textphone: 028 9083 3430 www.sense.org.uk nienquiries@sense.org.uk RNID Wilton House 5 College Square North Belfast BT1 6AR Tel/textphone: 028 9023 9619 Text answerphone: 028 9031 2033 www.rnid.org.uk information.nireland@rnid.org.uk RNIB 40 Linenhall Street Belfast BT2 8BA Tel: 028 9032 9373 www.rnib.org.uk rnibni@rnib.org.uk Transcription service RNIB provides a transcription service for transcribing documents into Braille, audio tape, disk etc. Tel: 01733 37 53 70 Fax: 01733 37 53 79 Email: busdev@rnib.org.uk Deafblind Awareness Training For information about training, contact: Signature (formerly CACDP) Wilton House 5 College Square North Belfast BT1 6AR Tel/textphone: 028 90 438161 Fax: 028 90 438161 www.signature.org.uk nireland@signature.org.uk Interpreting For information about using interpreters, contact your local Sensory Team or Signature as above. References: Butler, S J (2004) Hearing and Sight Loss – A handbook for professional carers, Age Concern England Crews JE, Campbell VA, (2004) Vision impairment and hearing loss among community-dwelling older Americans: implications for health and functioning. American Journal of Public Health; 94 (5); 823-9 Department of Health (1997) Think Dual Sensory – Good Practice Guidelines for Older People with Dual Sensory Loss Hodges, L and Douglas, G (2005) Short Study on hearing and sight loss – Preliminary Report for The Thomas Pocklington Trust University of Birmingham Third European Conference of Deafblind International’s Acquired Deafblindness Network proceedings (1998) Elderly Deafblindness Web-based resources: To make information accessible – see RNIB’s ‘See it Right’ pack – available at www.rnib.org.uk Sense website www.sense.org.uk Sense resources Seeing Me, a toolkit for staff in home care and residential services The Good Life, a booklet for people with older deafblind relatives It All Adds Up, pack for primary healthcare staff Thank you for taking the time to read this booklet. We hope you find it useful, and that you can help to fill in the gaps in older deafblind people’s lives. Sense Email: info@sense.org.uk 101 Pentonville Road Website: www.sense.org.uk London N1 9LG Registered charity no: 289868 Tel: 0845 127 0060 Fax: 0845 127 0061 Text: 0845 127 0062 October 2009